Genetic Counseling: Specialist Perspective

Randi Culp Stewart, MS, CGC

North Carolina Institute of Medicine

Task Force on a Perinatal System of Care

June 6, 2019

No conflicts of interest.

Current:

• Assistant Program Director at UNC Greensboro MS Genetic Counseling Program

• Pediatric Genetic Counselor (GC) at Cone Health System

Past employment:

• Past Prenatal GC at Duke University Medical Center

• Past Multispecialty GC in Fullerton Genetics Center

Learning objectives

• Prenatal and postnatal genetics services

• Referral patterns and access to care

• Billing

• Barriers to access

• Service delivery models & telehealth

Background

• Genetic counseling - the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease (www.nsgc.org)

• How inherited diseases and conditions might affect them or their families

• How family & medical histories may impact the chance of disease occurrence or recurrence

• Which genetic tests may or may not be right for them, and what those tests may or may not tell

• How to make the most informed choices about healthcare conditions

• Specialties: • Prenatal/Preconception, Pediatrics, Cancer, Adult, Cardiology, Neurology, Laboratory,

Industry, Research, Education, Metabolism, Personalized Medicine, Infertility

Genetic Counseling

Medical Genetics

Counseling

Education

Prenatal Genetics Services

• Common indications:• AMA (>35y at delivery), fetal ultrasound findings, family history concerns,

prenatal exposures, some maternal conditions, abnormal prenatal test result (screen or diagnostic test), carrier screening, preconception

• Referred for what service?

• Referral base:• Ob/Gyn providers & care team (NP, midwife, etc.)*• Maternal Fetal Medicine (MFM) physician*• Infertility, Endocrinology, Hematology, Family Practice, Pediatrics, Oncology• Patient self-referral?

• Genetics care team:• MFM, Genetic Counselor, Ultrasound technologist/Sonographer• Other – Nurse, Medical Interpreter, Financial Aid Counselor, Social Work, Other

Postnatal Genetics Services

• Common indications:• Developmental delays, autism, LD/ID, suggestive physical or facial features, birth defect,

mental health condition, behavioral problems, • Diagnosis of or “rule out” for chromosome condition (ex. Down syndrome), single gene

disorder (ex. Marfan syndrome, Achondroplasia), deletion/duplication syndrome, etc.

• Referral base:• PCP: pediatrician or family practice*• Developmental pediatrics, neurology, Behavioral health / psych, Cardiology• Patient self-referral?

• Genetics care team:• Medical geneticist, Genetic Counselor• Possibly others – Medical Interpreter, Cardiology, Endocrinology, etc.• Bio or adoptive parents, foster care, CPS worker, Social work, extended family, etc.

Postnatal Genetics Services

• Mechanism for communication of prenatal & postnatal genetics teams?

• If baby born with genetic diagnosis, suggestive features or high risk

• Newborn metabolic screen performed• If screen positive, repeat sample and/or present to care

• Early Check – Opt-in research study in NC to test for Fragile X syndrome and Spinal Muscular Atrophy (SMA)

• Hospital consult after birth by genetics team

• Scheduled in outpatient genetics clinic

• Follow up plan determined case by case

Value of Genetics Services

• Assess genetic risks

• Educate patient about options, risks, diagnosis, management, follow up

• Facilitate (complicated, expensive, specialized!) genetic testing• Nondirective, autonomous patient decision-making

• Pre-test & post-test counseling

• Ensure right genetic test is ordered for the right patient• Provide support & short-term psychological counseling

• Help with care for complex medical cases (mom and baby)

• Participate in Prenatal-Postnatal Case Conferences• Educate health care providers and medical learners

• Focus on individual patient & family

• Cost savings for genetic testing ordered• Downstream revenue

Who shows up for genetic counseling?

• Typically have insurance

• Willing and able to come to appointment• Have transportation• Can get off of work during clinic hours

• Informed of referral

• Often unaware of reason for referral or purpose of appointment• Misconceptions about genetics or utility of genetic testing

• Unclear expectations

• Stressed or anxious because of concerns• No one can “figure out what is wrong with their child”

• Either learned to be a super advocate already or does not know how/understand need for advocacy

Billing for genetic counseling

• CPT 96040 (created in 2007)• Replaced physician billed E&M time based code for genetic counseling• For “trained genetic counselors”• Time-based, stackable 30min code• Some but not all genetics clinics bill for GC services• Might still be billed as incident to physician• Some hospital barriers to using 96040

• Payers• Medicaid and other third party payers allow direct billing for GC • Medicare does not allow direct billing for GC (allow E&M code)

• Reimbursement• Billable services ≠ Reimbursement• Some health plans only reimburse for services when provided by a HCP credentialed

within their plan• Some payer policies restrict payment of services to only “licensed” HCPs

Billing for genetic counseling & testing

• Institutional considerations• Is institutional billing an option?

• Institutional mark-ups for special sendout (genetic testing)?

• Insurance companies have different policies, and may cover some genetic tests, but not others.

• Some companies cover counseling and testing under specific circumstances, or insist that certain requirements are met before they agree to cover genetic testing.

• Patients should check on insurance coverage before proceeding with genetics evaluation/testing

Barriers to access

• Workforce challenges• Genetic counselors• Medical geneticists (pediatric/adult settings)• Increased wait time for pediatric genetics services

• Genetic counselors are not licensed in NC• Downstream impacts• Cannot order genetic testing, bill for services, limits practice options,

• Cost for services• Genetic counseling• Ultrasound• Procedures• Genetic testing

• Genetic testing laboratories do not accept out-of-state Medicaid• Financial aid options?

Barriers to Access

• Distance/travel

• Educate referral base• Are they fully aware of services offered, patient benefits, opportunity for

collaboration?• How is option of genetics referral presented to patient and by whom?• Timing of referral (time-sensitive nature of pregnancy)

• Front end model vs. back end model?• Pros and cons of both• Importance of pre-test and post-test counseling!• Nongenetics providers ordering genetic testing

• Clinical rotation placements directly limits training opportunities

GC Licensure Status

• States issuing licenses

• CA, CT, DE, ID, IL, IN, KY, MA, MN, NE, NH, NJ, NM, ND, OH, OK, PA, SD, TN, UT, VA, WA,

• Passed bills/in rulemaking

• HI, IA, LA, MI

• Bill introduced or preparing to introduce bills:• CO, DC, FL, GA, KS, ME, MD, MN, MS, MO, NY, NC, NV, OR, RI, TX, WI

John RichardsonDirector, NSGC Policy and Government RelationsMarch 22, 2019

Licensure update

• Pursuit of licensure is gaining momentum in NC

• Current focus of North Carolina Medical Genetics Association (NCMGA)

• Loose plan for licensure:• Seek and obtain the support of the State Medical Board, who we will be asking

to provide the licenses before moving forward with any bill-specific language

• Work with NSGC attorney to define the minimum criteria for licensing (which is typically ABGC Certification) that will be entered into the bill

• Work with our local legislators to draft it, introduce it, and then we rally the community to support it

Access to Genetic Counselor Services Act of 2019

• Was supposed to be introduced in early April to recognize certified GCs as providers of Medicare. (do not have status update)

• The Act provides coverage of services furnished by GCs under part B of the Medicare program.

• GCs are those licensed by states as such, or for those in states without licensure, the Secretary of HHS will set criteria through regulation (likely ABGC certification).

• Other practitioners that currently provide the service will not be affected.

• GCs would be paid at 85 percent of the physician fee schedule.

• If E/M codes are used for billing the service, a CPT code modifier would be used to note the service was done by a genetic counselor.

• GCs would be able to assign reimbursement to their employer.

John RichardsonDirector, NSGC Policy and Government RelationsMarch 22, 2019

Future of genetics services

• Demand for genetics services continues to increase

• General shortage of genetics providers

• Growing niches for GCs

• Limitations from lack of licensure

• Billing and reimbursement challenges

• How can we keep up?• Front end vs. back end service• Explore all options for clinical training of GCs• Explore service delivery models• Multi-faceted approach

Service delivery models (SDMs)

• In-person / face-to-face

• Telephone

• Telemedicine (phone + audio)

• Group counseling

• Automation

• Motivating factors to pursue alternative SDMs• Distance, wait time, convenience

Cohen et al. (2016) – telemedicine and telephone GC

Telehealth in NC

• Currently being investigated by North Carolina Medical Genetics Association (NCMGA)• To be reported at upcoming SERGG (7/2019) and NCMGA meetings (11/2019)

• Several medical centers appear to be offering telehealth in some specialties

• Some genetic testing laboratories• Free telecounseling?

• Might limit where samples are sent

• Private companies – contract basis

• In person counseling ideal if/when possible

Telehealth options

http://www.metisgenetics.com/

https://www.pwnhealth.com/

https://informeddna.com/https://www.labcorp.com/resource/genetic-counseling-services#

https://www.invitae.com/en/

https://www.color.com

https://www.gene-matters.com/

https://www.gene-screen.com/

…and many more!

References

• National Society of Genetic Counselors (NSGC): www.nsgc.org

• North Carolina Department of Health and Human Services /

NC Newborn Metabolic Screening Program: https://slph.ncpublichealth.com/Newborn/default.asp

• Early Check: https://earlycheck.org/

• Genetic Counselor Professional Issues. Presentation by John Richardson on March 22, 2019. North Carolina Medical Genetics Association.

• Cohen et al. Analysis of Advantages, Limitations, and Barriers of Genetic Counseling Service Delivery Models. J Genet Couns (2016) 25:1010-1018.

Thank you!